The Multidimensional Role of Social Media in Health Care

The first regular installment of my new Social Mediator forum at ACM Interactions magazine came out in the July/August 2011 print edition last week. Dana Lewis served as guest editor for The Multidimensional Role of Social Media in Healthcare, soliciting and compiling a fabulous collection of short contributions from some of the leading voices in the Health 2.0 / e-Patient movement. When I circulated a PDF of the article among Dana and the other contributors - all of whom are pre-eminent participants on a variety of social media platforms - the response was immediate and enthusiastic: when / where / how can we share this with others?

I believe this and other articles in the Social Mediator forum will be among the subset of those made freely available on the new ACM Interactions web site, which is still under construction. Meanwhile, I am permitted to post a pre-print version of the article here on this blog [I will update this post with a link to the article on the ACM site once it is published there]. I hope others will benefit from pearls of participatory healthcare wisdom - and healthcare participatory wisdom - shared here by @danamlewis, @ePatientDave, @ReginaHolliday, @SeattleMamaDoc and @nickdawson:

The Multidimensional Role of Social Media in Healthcare

Dana Lewis (@danamlewis) is a leading voice and active participant in the use of social media in healthcare. As the founder and moderator of #hcsm, the fast-growing and fast-paced Sunday night healthcare chat on Twitter, she has regular interactions with a diverse network of stakeholders in the healthcare social media ecosystem, from patients to providers, from instigators to administrators. Dana kindly accepted my invitation to serve as guest editor for a Social Mediator article about the use of social media in healthcare, and promptly solicited the engagement of other participant-leaders - who spark conversations on #hcsm and elsewhere - representing several key dimensions of this growing movement. [Joe McCarthy (@gumption), Social Mediator forum editor]

Can a hashtag change healthcare? In our world, it can. Gone are the days of healthcare being ten years behind the technological curve. Now, individuals and organizations are meeting up online and using these tools to make a difference in healthcare. In some cases, like “e-Patient Dave” deBronkart's, the difference is choice rather than consent: The choices he learned about via social media can empower patients to beat his type of cancer. Technologies such as electronic health records were not available to help artist and patient advocate Regina Holliday’s husband beat his cancer; she has since taken up paintbrush and keyboard to write on walls – online and offline – to share her healthcare story and advocate for change. Innovative physicians like Dr. Wendy Sue Swanson feel obligated to use these new social technologies to connect in new ways with patients, and hospital community engagement director Nick Dawson says the Health 2.0 evolution has grown from 1.0 (or 101) to graduate studies in social health, as social media is embraced across all parts of healthcare.

The Coming Revolution in Patient Power: Choice, Not Consent

By e-Patient Dave deBronkart

We’re at the beginning of a revolution: the switch from informed consent to informed choice in medical decisions. Social media is playing a vital role in this transformation.

I’m alive and healthy because of great doctors: diagnosed with advanced kidney cancer, I got care from a great oncologist, great surgeon, great orthopedist (when the cancer broke my leg), and a great primary care physician. Their approach is choice: “Here’s the situation. There are three things we could do, and they all have tradeoffs, so the right choice really comes down to your preference.”

But forty years of research reviewed in the book Tracking Medicine, by Jack Wennberg, MD, have shown that although most medical decisions have more than one option, often the patient is simply given a consent form to sign, sometimes while en route to the operating room. That’s “consent” (supposedly informed), not choice.

The databases Wennberg analyzed show an amazing pattern of “practice variation”: your probability of having many types of treatment depends on unscientific factors. Often it’s customs of local doctors: “I just don’t believe in doing it that way – I think it’s better this way,” sometimes with no evidence. Your odds of getting a treatment may depend on how much of it is available in your neighborhood.

And most doctors have no idea they’re doing it. They may honestly think they’re just practicing good medicine.

The impact on us is risk: every hospitalization carries risk of harm or death. That doesn’t mean stay out; it means don’t take the risk until you’ve assessed your options.

What’s the remedy? Mine was social media: an online patient network. My doctor recommended the Association of Cancer Online Resources (ACOR), a multi-channel participatory platform including email distribution lists, wikis and other online resources for physicians, patients and others dealing with cancer.

ACOR members told me there’s only one treatment for my disease that approximates a cure (HDIL-2) – and most patients are never told about it. Why? Because it usually doesn’t work, most hospitals don’t offer it, and most physicians don’t know the latest about it, so they may think it’s not worth even suggesting to us. Considering it’s the only thing that had a chance of curing me, don’t you think I should decide that?

That’s what I mean about choice. Since all options have tradeoffs, won’t you want to choose? If we don’t ask, we may have no say in how the options are prioritized. Healthcare social media platforms like ACOR help expand our awareness of the range of options that may be available to us.

The good news is that patients and policy people are waking up. Last December a global seminar convened in Salzburg, Austria, and in March published the “Salzburg Statement”, a declaration of principles that starts: “We call on clinicians to recognize that they have an ethical imperative to share important decisions with patients.”

Until that’s a cultural reality in the traditional medical establishment, which may take a full generation, our best option is to inform ourselves, by talking to people who’ve been down that road before – fellow patients. And by far the best way to find fellow travelers is social media.

Occasionally, I am asked why I decided to write my outrage on a wall. I respond “Which wall? The wall at the gas station or are we talking about my Facebook page?”

On May 27th, 2009, I attended my first Health 2.0 meet-up hosted by Christine Kraft. At that point, I did not know the term Health 2.0. I left my husband’s side for 5 hours while he was in hospice. I sat in a room filled with thought leaders from the movement and proposed I would paint a mural depicting my husband’s medical chart. This mural would combine my husband’s personal medical information with the open format design of a nutrition facts label, and would do so on a wall in Pumpernickels Deli for all of our neighbors to see. The group was amazingly supportive. They would help me to channel my vision for the next large mural, 73 Cents, a painting that depicts our family’s horrific medical journey and lack of information access prior to my husband’s death. Due to a large social media following as well as local news coverage, the image of the painting was broadcast throughout the world, inspiring advocates for patients to this day.

In the following months, I continued to blog, tweet and post about patient rights. And fell more deeply into the embrace of the Health 2.0 movement. I loved the participatory tone of Health 2.0 chats. I rejoiced in the openly disruptive comments often posted by people who were re-shaping the health system without institutional permission.

I don’t know if healthcare strategist Matthew Holt and other Health 2.0 friends consider themselves ‘street’. The Health 2.0 movement has much in common with the street art movement. The innovators in health data often side-step traditional institutional hierarchy in their attempt to create better medical care. Using a loose organizational structure supported by the tools of social media, these innovative thinkers post their work on comment fields in online patient communities as well as insider publications within the field of medicine. Their ‘codeathons’ mimic in participation and intensity the energy of a well-attended flash mob. The frequent rise and fall of tech start-ups within the Heath 2.0 community, while regrettable, reminds me of the ephemeral stencil art of the gritty street. Their very existence creates and fuels a “tag” and that tag leads to a movement.

I am amazed and honored that I am a part of the world of Health 2.0. I gladly set up my easel and paint on city streets images of data streams and HCAHPS scores, as tides of people pass around me. I may be here today and gone tomorrow, but because of the free access nature of social media, my work in art and medicine can always be seen in the cloud.

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Regina Holliday (@ReginaHolliday) is a DC-based patient rights artist and advocate. She is currently at work on a series of paintings depicting the need for clarity and transparency in medical records. She is an avid blogger and writes Regina Holliday’s Medical Advocacy Blog.

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An Online Obligation

By Wendy Sue Swanson, MD, MBe, FAAP

I firmly believe I have an obligation to share my expertise and my experiences in understanding pediatrics online. As a doctor, technology simply makes it easier. Medicine is far from static; being online allows me to share what I learn every week with my patients. Parents/patients are online far more than they are in my office, so instead of only exchanging ideas when they gown-up in exam room #4, I can join them where they already are: in social networks, on the internet, on their smart phones, and on YouTube. Sharing expertise online is an efficient format to inform thousands at once, perpetually.

I also firmly understand that we patients want intimate, personal, responsive, and empathetic care from our doctors. All medicine can’t be practiced online. With technology and new media we physician-patient dyads are no longer constrained to the exam room as our only educational space. Acknowledging those truths, I’ve found a better balance: I work part time in a clinic seeing patients in a traditional model, and part time using tools like Twitter, my blog and YouTube to share what I know. Or what I’m learning.

In my mind, it’s clean and clear how technology builds a bond between my patients and me. This isn’t one-sided; rather it’s bi-directional. I feel more connected with science, with my mission in curing children of illness, and with my patients via social media. I give lots to technology. I get and learn far more in return. I suspect my patients would also echo this sentiment. And for clarity, there are two essential elements that technology provides in my world as a pediatrician, mom, wife, and community member:

Sharing. I share thoughts on new research, new opinions, and new trends in parenting and pediatrics. I share my stumbles as a parent myself. Physicians share opinions every day; sharing online is arguably no different. Families in my practice (and others outside of it) can follow my online content year round and have access to what I think about new research or controversial parenting topics.

Education. I’m an educator by profession (pediatrician, previous middle-school teacher, and mom). Innovations like Google Body allow me to use advancing technologies to demonstrate, teach, and inform families why their child is ill, in pain, or how they’ll heal. I often send parents to my blog as it offers comprehensive detail regarding the rationale behind my recommendations. For example, why do I suggest no Tylenol before shots? Why do I think it’s essential to keep children rear-facing in the car seat until they’re 2 years old? In the 15-20 minute visit I’m allowed in practice, there simply won’t be time to review all we want.

My blog serves as a repository of my advice and where I think science holds answers to assist us in making great decisions for our children.

For students, spring is more than warmer weather. At this time of year, students are focused on a school year ending, another notch on their belts, leveling up. What’s next? Freshmen, wise with the accumulated wisdom of two semesters, become sophomores. Sophomores move off campus. Juniors are busy contemplating internships. Like students in spring, many individuals and organizations involved in healthcare are finishing up their freshmen or sophomore years of using social media. In the past few years, there has been a movement in the industry around the adoption of these social tools to change how providers connect with patients, other caregivers and employees. The way they are using social media differs almost as much as sophomores picking their varying majors.

According to Ed Bennett’s Hospital Social Network List, over 900 hospitals in the United States are using some form of social media. There are YouTube channels, Twitter accounts, Facebook pages, blogs and more. He also links to lists of social media sites from Canada, Europe, and Australia. According to Bennett’s data, the hospitals on his list include some of the most recognized names in healthcare. It’s hard to imagine they were once freshmen.

In the early days of social media adoption in healthcare, it was about claiming your spot, top bunk or bottom. Which dorm was cooler, Facebook or Twitter? There were more questions than answers. Is it ok to engage with a patient on Twitter, or is that a HIPAA violation? Should something as serious as healthcare appear on the same site where kids are posting pictures from last night’s party? These were heavy questions as a freshman early adopter.

Fast forward a few months and those early questions gave way to success stories. Patients began finding and talking to doctors online; they discovered new resources to enable them to more effectively participate in their own care. Support groups formed online. Savvy healthcare providers stopped talking at patients through marketing and began engaging more authentically with them.

In January 2011, a cornerstone of the healthcare social media movement, the Sunday night #HCSM twitter chat, turned two years old. Our original freshmen are all grown up. Without a doubt, this moment is an exciting time to watch healthcare social media evolve as providers move away from discussions about which platform is best; beyond ROI 101 and HIPAA 102. The upperclassmen of the industry are exploring how to use social tools to impact the health and wellness of patients in more effective ways.

In late 2010, Mayo Clinic launched their Center for Social Health, a consortium of industry thought leaders and early adopters. The Cleveland Clinic has launched their ‘Lets Move It’ mobile smart phone application and online campaign designed to encourage people to be active. Other enterprising health systems are looking at geolocation services to allow people to “check in” to health activities. The potential innovations are endless. The upperclassmen years ahead will lead the way to graduate studies in areas such as mobile health, disease-specific communities and improved design and integration of electronic medical record systems.

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Nick Dawson (@nickdawson) is the administrative director of Community Engagement for Bon Secours Virginia Health System in Richmond VA. In 2009 Dawson led the pilot which became Bon Secours' social media program. Today he continues to provide strategy for the system’s digital communications work, business development and “accountable care” readiness.

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As you can see, healthcare is evolving along many trajectories with the help of social media, from 1.0 to 2.0 and beyond. Stakeholders from all dimensions of the health ecosystem are embracing social media to improve the quality of care that patients have access to. Perhaps most importantly, we've moved from questioning the efficacy of social media in healthcare to experimenting how it can be used more effectively, and are changing healthcare as we go.

Guest editor Dana Lewis (@danamlewis) is the founder and curator of #hcsm, the fast-paced, Sunday night healthcare chat on Twitter, a movement which has grown into an international community. She is the Interactive Marketing Specialist at Swedish, a non-profit health system serving the greater Seattle area, where she develops and implements social and digital communication strategies for individuals (from physicians to the CEO), groups, and the organization overall. She started using social media after her diagnosis with type 1 diabetes in 2002 and continues to engage online to improve her own health care and advocate for patients.